All Party Parliamentary Group for MS: Review into Employment Support for People with MS
Call for written evidence
About the Review
The APPG on MS, with support from the MS Society, has launched a review into the employment support needs of people with MS to understand what support has been particularly effective, and what more needs to be done. The review will cover both out of work support for those wishing to gain employment, and support in the workplacefor those currently in work and in need of support.
About the survey
To better understand this issue, we would be grateful for your expert insight and views in response to the questions in this survey. We welcome evidence relating specifically to MS, as well as evidence relating to long term conditions more widely. Long term conditions are health conditions that last a year or longer, impact on a person’s life, and may require ongoing care and support.Please answer as many questions relevant to your organisation/area of expertiseas you can, and return the survey to katha Friday 29th April.
Please note that the boxes will expand as you write – do not feel constrained by their current size.
Questions
1. What type of organisation are you responding from?
- Think-tank☐
- Not for profit/charity/voluntary organisation☒
- Employment support provider☐
- Employer☐
- Advice Service☐
- Professional association/body☐
- Other [please give details]☐………………………………
2. Please tell us about any experience you have of providing employment-related support to people with long term conditions such as MS.
The MS Trust is a charitable organisation which exists to support both people affected by MS and the health professionals who support them. We focus on health information, but our information team handles enquiries on all topics related to MS. Where an issue is outside of our expertise we signpost to other organisations that can help.About MS
MS is a degenerative neurological condition affecting the nerves in the brain and spinal cord. It can cause a wide range of disabling physical and cognitive problems. MS typically affects young adults in the prime of life: most people are diagnosed in their 20s and 30s. It is the most common condition of the central nervous system affecting young adults. There are more than 100,000 people with MS in the UK, about one in every 600 people.
The 2015 report ‘Time Matters in Multiple Sclerosis’[1] summarises research statistics about the link between MS and disability, saying, “[MS] is the leading cause of non-traumatic disability among young and middle-aged people in many developed countries. MS is the most common cause of wheelchair use among those aged 18–64 years, and the third most common cause of paralysis (after stroke and spinal cord injury) across all age groups in the USA. The disease thus negatively affects the lives of people with MS and their families, and leads to large, long-term health and economic burdens.”
These physical symptoms that many people with MS experience are only one way in which people’s ability to remain in work can be affected. ‘Invisible’ symptoms like pain, fatigue and cognitive impairment can be the most disabling symptoms of all. MS symptoms can be unpredictable and difficult to manage: someone with MS may not know how they will feel from one day to the next, and symptoms can appear or recur at any time. The unpredictability of MS is one of the major challenges to people with MS finding and staying in work and the provision of effective employment support.
The impact of MS on employment
The 2015 report of our Generating Evidence in MSServices programme[2] highlights the impact that MS has on people remaining in paid employment. These statistics are based on survey data from 1,254 people with MS from across the UK. They show that 42% of working age respondents (age 63 and under) were in paid employment. This proportion falls in line with the time since diagnosis. At 0-2 years since diagnosis 65% are in work, at 3-4 years this falls to 61%, at 5-10 years 43%, 10-20 years 33%, and 20+ years post diagnosis only 20% are in paid employment..
Of the 526 working age respondents who did not say they were doing paid work, 455 provided reasons why. 80% said they had stopped work early on ill health grounds. Again, there is a clear correlation with time since diagnosis. At 1-2 years since diagnosis 19% had stopped work due to ill-health, at 3-4 years 24% had stopped, 5-10 years 40%, 10-20 years – 49%, and at 20+ years 56% had stopped working due to ill health.
The 2015 report ‘Time Matters in Multiple Sclerosis’ provides an international perspective on the impact of MS on employment. Unemployment levels among people with MS are higher than those in the general population, even at low levels of physical disability This suggests that the ability to work is affected early on; the most likely reasons for this are problems such as cognitive decline, fatigue, depression and anxiety, which are not fully captured by the EDSS. This observation is supported by real-world evidence (evidence obtained from outside the clinical trial setting), which indicates that cognitive impairmentand fatigue, as well as problems with hand function and mobility,are associated with an increased likelihood of becoming unemployed. As physical disability progresses, the proportion of people with MS who are unemployed rises markedly. [1]
How we help
We believe that one of the best ways to help people with MS is to support them to take more control of their MS. Our information service provides free, practical, evidence-based information to people affected by MS (including family, friends and employers) to help people with MS make the choices that are right for them, decide how best to deal with their health, and have better informed discussions with professionals in all aspects of their life.
We produce a range of free resources available to everyone affected by MS. These include our ‘At Work With MS’ web resource [3], our 2015 ‘Making Sense of MS’ guide [4] which includes a chapter on working and studying, and our updated 2015 guide ‘Living With Fatigue’ [5].
We focus on health information, but can provide information, reading lists and signposting on all topics related to MS. Our information team provides one-to-one support to help people find the information they need and offers a free one-to-enquiries service for anyone trying to manage MS in the workplace. Where we cannot help directly we provide signposting to other sources of advice. For example, we do not provide individual casework or legal advice but signpost to organisations who can. We help people to recognise that the law is on their side and that they are entitled to work with their employer to agree reasonable adjustments to help them manage their MS in the workplace. Our service is not a replacement for professional occupational health involvement, but we can help people to think about the variety of ways that MS might be affecting their work and the kind of reasonable adjustments that could be considered. We can provide examples of approaches other people have found helpful, and signpost to specialised organisations and programmes like Access to Work where appropriate.
Work-related matters are the 10th most common topic handled by our information service. In 2015 we handled 120 enquiries on work matters - more than two a week. These covered a wide range of issues including managing disclosure, reasonable adjustments, employment law and rights, support finding work, ill-health retirement, managing DMDs and hospital appointments while working, and MS awareness training for employers.
3. What features of the support you provide, if any, have been particularly effective?
The most effective feature of the support we provide is unquestionably our information service which provides tailored information and support in response to enquiries from anyone affected by MS.Our information team writes our in-house resources which we provide free of charge to people affected by MS and health professionals. Of these, the most popular resources relating specifically to employment support are:
At Work with MS [3]
This resource, authored by the MS Trust information team and a senior occupational therapist with expertise in MS, includes a decision aid to help people think through whether they should carry on working, and to help them ‘unpick’ what is worrying them about work and guide them trhough identifying possible solutions. The resource also includes advice on changing roles and information on employment rights.
Making Sense of MS [4]
A guide for people newly diagnosed with MS, including a chapter on working and studying with MS. This resource is based on research with people living with MS who told us that, because everyone’s experience of MS is different, and everybody deals with it in different ways, any information we produced needed to be flexible. You should be able to choose as much or as little as you wanted, or needed, on any particular topic at any particular time. They also wanted information that was positive, practical, up to date and available in print and online. Making Sense of MS provides essential, introductory information at the point of diagnosis and further information that is available in a ‘pick-and-mix’ format so that people can choose what they need, when they need it.
Living with Fatigue [5]
This book looks at ways to manage fatigue and is illustrated with comments by people with MS who know what it is like to live with the symptom. Based on a fatigue management programme, it is a popular self-management resource for people with MS.
Staying Smart [6]
Staying Smart is our website for people who want to understand how MS can affect thinking, concentration and memory. StayingSmart starts with everyday problems and contains different levels of information for each aspect of cognition considered. The Tips and Tricks section has ideas from people living with cognitive symptoms. Gadgets and Gizmos suggests items of equipment that may be helpful. There are a number of video clips of people discussing their symptoms.The versatility of the resource means that it can be used by people with MS, their families, and health professionals independently, or by people with MS in partnership with their health professionals.
We also provide support to health professionals working with people with MS. We run workshops on issues related to employment support and MS in the workplace at our annual conference and during our annual nurses meeting. MS nurses told us that these sessions made them feel more confident about discussing employment issues with their patients. Although our annual nurses meeting has now been discontinued following the end of the Risk Sharing Scheme, our annual conference remains in place.
4. Have there been any barriers at an individual, organisation, or policy level that have made it difficult for you to support people with long term conditions such as MS? What would help you to provide better support?
The funding environment for charities is extremely competitive and it is virtually impossible to cover the core costs of running an information service like the one we provide. This impacts on our organisational capacity meaning we have to prioritise the areas of in-house expertise that we are able to develop.Out of work employment support
5. What are the barriers at an individual, organisation, and policy levelto people with long term conditions such as MS getting back into work, and how could these be overcome? Where relevant, please illustrate with evidence and examples.
Please see our comments at Q2.6. How adequate and appropriate are Government programmes for out of work employment support (such as the Work Programme, Work Choice, Jobcentre Plus) at supporting people with long term conditions such as MS?
This is outside the scope of our organisational expertise. However, at an anecdotal level, we know that these do not always match the needs of people with variable and progressive conditions like MS.7. Are there any particular sources of support that you think should be prioritised and promoted to people with long term conditions such as MS?
Please see our comments at Q128. Are there any particular aspects of out of work support provision which are not working or that could be improved? If so, how could they be improved?
Outside the scope of our expertise.9. How should out of work benefits interact with access to sources of employment support, such as the Work Programme and Work Choice government schemes?
Outside the scope of our expertise.10. Please describe what you think an ideal employment support programme tailored to help people with long term conditions such as MS get into work would look like, in terms of both content and structure.
This is a question that should be addressed by a multi-disciplinary group of health and occupational professionals with expertise in MS, alongside employers with experience of managing people with MS in the workplace and people with MS themselves.In work employment support
11. What are the key issues preventing people with long term conditions such as MS from accessing the support they need in the workplace?
- Lack of equitable access to a multi-disciplinary team of health professionals with expertise in MS
- MS specialist nurses (MSSNs)
Figure 36 on page 58 of our GEMMS report [2] shows the patient-reported benefits of accessing an MSSN service over the last year. While only 6% reported specific help to stay in employment, the long list of other benefits such as advice on physical symptoms and preventing future problems demonstrates a clear link between the support MSSNs provide, the effective management of symptoms, and the kind of issues the can prevent or enable people to continue working. A specific question asked people whether they thought having an MSSN had improved the overall coordination of their care. Nearly three quarters of respondents said that the MSSN had definitely improved coordination, reflecting the fact that many MSSNs bridge the boundaries between acute and community care. This was further highlighted in many of the examples given by respondents of MSSNs coordinating care, referring to other professionals or brokering services or equipment from other services on their behalf using their assessment skills and specialist network.
There are clear economic benefits to helping people with MS to remain in employment besides the positive impact on their life satisfaction and opportunities for social contact. First, to them and their families, employment brings significant financial benefits. Our GEMSS report shows that, using UK 2014 average gross earnings of £13.08 per hour, the overall benefit across a MSSN caseload of 358 people based on 5.9% of the caseload remaining in employment at 25.9 hours per week would be £372k in earnings paid to pwMS. [2, page 86] An additional benefit of pwMS remaining in employment is a benefit to the state in not having to pay out of work benefits. Benefit/Personal Independence Payment levels vary between individuals, but at the rate of £100 per week, the cost to the state of benefits across 5.9% of an MSSN caseload would be £110k. The suggestion is not that MSSNs alone achieve these types of savings, but MSSNs, as brokers and coordinators of care and working with colleagues in Occupational Therapy and vocational medicine can make a major contribution to reducing the societal economic burden of disabilities caused by MS.
Unfortunately, we know that not everyone has access to an MSSN and that MSSN caseloads are unsustainably high in many areas. As highlighted in our 2014 report, The Case for Equitable Provision [7], the NHS across the UK needs an additional 62 WTE MSSNs to add to the 234 WTEs in post, to enable all MSSNs to have caseloads within the ‘sustainable’ level of 358 pwMS. The findings of our GEMSS report have demonstrated the impact of excessive caseloads for pwMS themselves, with a substantial minority saying that they had insufficient support and many reporting feeling abandoned, despite having symptoms and needs which could be ameliorated by MSSN input. An increase in the available workforce of MSSNs remains a priority, along with therapists and others who provide pwMS with badly needed support.
Equity of access is also a priority issue that the MS Trust is exploring in our MS Forward View project. The findings of our recent survey [8] show that too many people living with progressive MS feel they are getting a second class service. They see their health professionals far less often than people with relapsing remitting MS, and often fail to receive the proactive, continuing care that can make all the difference to living will with the disease. Some people diagnosed with secondary progressive MS feel abandoned and left to manage on their own, just as their disease is entering a new phase, with complex symptoms and increasing disability that makes remaining in the workplace even more challenging.